Hello @steeldove, I'd like to invite @kruppm and @jeffbrewer to share their experiences with IVIG treatment for different variations of neuropathy.
While we wait for others to join the conversation, would you feel comfortable sharing a bit about your LSRPN diagnosis? How long have you had this diagnosis and how are your symptoms?
Hello @steeldove, I'd like to invite @kruppm and @jeffbrewer to share their experiences with IVIG treatment for different variations of neuropathy.
While we wait for others to join the conversation, would you feel comfortable sharing a bit about your LSRPN diagnosis? How long have you had this diagnosis and how are your symptoms?
I've not had a formal diagnosis of LSRPN, but have done extensive research seeking answers to the unusual pain pattern in my thighs (hip flexors to knees) combined with idiopathic PN and spine issues. I found that many of the scholarly articles about the subject were by the Dr. P.J. Dyck and Dr. P. J. B Dyck at Mayo. I have appointments at Mayo in late August, and hope that I can schedule time with one or both of the Drs Dyck.
I woke in the night with a sharp pain in my low back, the next day it went across my hip and into my groin and by the following night I couldn’t walk, sit or lay down. No position was comfortable and the pain increased 10-fold. I went to the emergency room 3 times and was hospitalized for a week but they couldn’t find a cause. It took five months before I was referred to a neurologist and was diagnosed with non-diabetic LSRPN 18 months ago and continue to have ongoing symptoms: numbness in foot, sensory pain on top of foot and up my shin, nerve pain, severe muscle spasms in foot, leg and hip; my quadriceps also “burn”. My leg feels heavier and heavier as the day goes on and sometimes I have foot drop if I’ve done too much, which isn’t a lot compared to my “norm”. Wearing shoes is difficult, and wearing jeans or pants make my leg feel that much heavier. My iliacus muscle in my hip has never relaxed since the onset of this affliction. Time, physio and massage with a healthy dose of meds have been part of the recommended treatment plan for me. I would love to hear from other members who have had this or are going through it!
I woke in the night with a sharp pain in my low back, the next day it went across my hip and into my groin and by the following night I couldn’t walk, sit or lay down. No position was comfortable and the pain increased 10-fold. I went to the emergency room 3 times and was hospitalized for a week but they couldn’t find a cause. It took five months before I was referred to a neurologist and was diagnosed with non-diabetic LSRPN 18 months ago and continue to have ongoing symptoms: numbness in foot, sensory pain on top of foot and up my shin, nerve pain, severe muscle spasms in foot, leg and hip; my quadriceps also “burn”. My leg feels heavier and heavier as the day goes on and sometimes I have foot drop if I’ve done too much, which isn’t a lot compared to my “norm”. Wearing shoes is difficult, and wearing jeans or pants make my leg feel that much heavier. My iliacus muscle in my hip has never relaxed since the onset of this affliction. Time, physio and massage with a healthy dose of meds have been part of the recommended treatment plan for me. I would love to hear from other members who have had this or are going through it!
Welcome to Connect @sher456. I'm tagging @steeldove to see if he is able to share any on Microvasculitis in non-diabetic lumbosacral radiculoplexus neuropathy (LSRPN). I'm also tagging @kruppm and @jeffbrewer to see if they are able to share any suggestions with you. I can't imagine how difficult it must be to deal with the symptoms on a daily basis.
Have any of the recommended treatments been helpful for you?
I have been diagnosed with LSRPN but have not had IVIG. It was explained to me that I simply needed time for the nerves to regenerate (18 months-2years).
I have been diagnosed with LSRPN but have not had IVIG. It was explained to me that I simply needed time for the nerves to regenerate (18 months-2years).
Hi @sher456, Are you thinking about an IVIG for treatment or has your doctor recommended it? I did find some positive information about the treatment for non-diabetic LSRPN that may be helpful although it's from March 2002.
I have been diagnosed with LSRPN but have not had IVIG. It was explained to me that I simply needed time for the nerves to regenerate (18 months-2years).
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Hello @steeldove, I'd like to invite @kruppm and @jeffbrewer to share their experiences with IVIG treatment for different variations of neuropathy.
While we wait for others to join the conversation, would you feel comfortable sharing a bit about your LSRPN diagnosis? How long have you had this diagnosis and how are your symptoms?
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Helpful -
Hug
2 ReactionsI've not had a formal diagnosis of LSRPN, but have done extensive research seeking answers to the unusual pain pattern in my thighs (hip flexors to knees) combined with idiopathic PN and spine issues. I found that many of the scholarly articles about the subject were by the Dr. P.J. Dyck and Dr. P. J. B Dyck at Mayo. I have appointments at Mayo in late August, and hope that I can schedule time with one or both of the Drs Dyck.
I woke in the night with a sharp pain in my low back, the next day it went across my hip and into my groin and by the following night I couldn’t walk, sit or lay down. No position was comfortable and the pain increased 10-fold. I went to the emergency room 3 times and was hospitalized for a week but they couldn’t find a cause. It took five months before I was referred to a neurologist and was diagnosed with non-diabetic LSRPN 18 months ago and continue to have ongoing symptoms: numbness in foot, sensory pain on top of foot and up my shin, nerve pain, severe muscle spasms in foot, leg and hip; my quadriceps also “burn”. My leg feels heavier and heavier as the day goes on and sometimes I have foot drop if I’ve done too much, which isn’t a lot compared to my “norm”. Wearing shoes is difficult, and wearing jeans or pants make my leg feel that much heavier. My iliacus muscle in my hip has never relaxed since the onset of this affliction. Time, physio and massage with a healthy dose of meds have been part of the recommended treatment plan for me. I would love to hear from other members who have had this or are going through it!
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Helpful -
Hug
2 ReactionsWelcome to Connect @sher456. I'm tagging @steeldove to see if he is able to share any on Microvasculitis in non-diabetic lumbosacral radiculoplexus neuropathy (LSRPN). I'm also tagging @kruppm and @jeffbrewer to see if they are able to share any suggestions with you. I can't imagine how difficult it must be to deal with the symptoms on a daily basis.
Have any of the recommended treatments been helpful for you?
-
Like -
Helpful -
Hug
1 ReactionI have been diagnosed with LSRPN but have not had IVIG. It was explained to me that I simply needed time for the nerves to regenerate (18 months-2years).
Hi @sher456, Are you thinking about an IVIG for treatment or has your doctor recommended it? I did find some positive information about the treatment for non-diabetic LSRPN that may be helpful although it's from March 2002.
Does Immunotherapy Reduce Morbidity in Nondiabetic LSRPN?
-- https://www.jwatch.org/jn200203080000011/2002/03/08/does-immunotherapy-reduce-morbidity-nondiabetic
@steeldove and @sher456 I'm wondering if either of you ever had any improvements in your situation?
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1 ReactionYes I am doing IVIG. Hard to tell if it’s helping.
No, but I FINALLY have an appointment with Dr. P.J.B.Dyck on December 1, 2021
Please tell me what IVIG is.